The goal of this blog is to inform, encourage and inspire mothers of children with special needs, as well as those who love and support them. Please share your advice, challenges and triumphs.

Thursday, April 30, 2009

Pondering the Neurodiversity Movement

"I am not a puzzle, I am a person" is a salon article by Elizabeth Svoboda with this preface: People with autism don't need to be "cured," argues the burgeoning "autism culture" movement. Not all parents or medical experts agree.

This fascinating article was forwarded to me by my friend and personal autism-issue clipping service (Thanks, Mr. D!). It's about the "neurodiversity" movement - and I'm not sure what my opinion is on the idea that society needs to learn to adapt to people on the autism spectrum, not the other way around.

I am quite concerned about the "ABA-bashing" aspect of this movement. Individual ABA therapy, a type of behavior therapy commonly used for people with autism, jump started Sayer's ability to talk, and instilled in him vital self-sufficiency skills. Both his language and self-help abilities are essential to who he is today - although he STILL would have you believe he needs help putting on his socks. And I think that the "aversive" techniques originally used in this therapy, decades ago, are rare today.

On the other hand, any movement that disparages Jenny McCarthy has some merit, in my book. From the article:

Jenny McCarthy can go jump off a cliff. While the Hollywood comedian's claims that childhood shots cause autism may be well-intentioned, Ne'eman says, her message has a pernicious and probably untrue implication: If we stopped giving kids "toxic" vaccines, autism wouldn't exist. Not only does this message distract from pragmatic efforts to get autistic kids the social support they need, it implies that autistic children are inherently less valuable than their normal counterparts. "The cure paradigm sends a message that there is somehow a normal person under the autistic person, and that's a significant denial of who we are.

But yet - people like Sayer do need to fit into the world as it is and not endanger themselves or others. And to disparage therapies is like throwing the baby out with the bathwater. Please share your views on the idea of neurodiversity, and this article.

6 comments:

Pam
said...

Hi Carol, I loved the article. I agree most with the statement about this issue : "....it's complicated". It seems appropriate to me to fund ABA and special education to the point of encouraging maximum life skills (dressing, meal prep, etc.), communcation, social, and academics while as families and society leaving room for sensory and personality differences. I am a big fan of the guys portrayed on the TV show Big Bang Theory. Take care, Pam

I think there's a fine balance between both theories. I think it is a necessity to try to assist our children to fit into the world the best they can, AND I think the world needs to accept and give leeway to all those with special needs.

I will have to read the article later, I think that there are different 'types' of autism (I am not a medical expert). I know that Jenny has had to 'backstep' on her 'curing' thing because there is no 'cure', rather you can 'treat'.

If you have seen her house. Her son lives in an isolated 'bubble'. He is homeschooled (no other kids present); sterile environment; so pretty asocial....she said she 'hopes' to integrate him with typical kids (she bought the house next door and is converting it), but that her son will continue to go to the 'sterile' school (ie. room in her house). She's also had to backtrack and said that her son has in fact, been 'hit by a bus', in that he will always have autism, but that the symptoms are minimal (she isn't using the 'cured' word anymore).

I think that we are all 'doing the best that we can' with our own given situation. As I explained once to my support group, put together 100 kids with autism and you will have 100 ways to help those kids (thus the term Individualized Educational Plan, for example). It does bother me when you say to parents, "this is the ONLY way' to help children like ours. I think there are many ways.

No, we should be hard on Jenny McCarthy, as often and as forcefully as possible. Her new gig hosting a talk-show (thanks to Oprah) will give her an even bigger audience to spout nonsense about vaccines, toxins, rainbow children or whatever she's on to now. I for one don't want to see easily preventable diseases getting a toehold again thanks (in part) to her ignorant pronouncements.

About Me

I am the mother of two sons, one on the autism spectrum.My musings at times . reflect my educational background in sociology and social work and work as a public policy researcher and grant writer. At other times my musings contradict my prior convictions - ah, the perks of life experience. I live near Portland, Oregon.